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A MyLupusTeam Member asked a question 💭
Ottawa, ON

Have any of you being diagnosed with Lichen Planus, which is irreversible hair loss. I was diagnosed a few months ago and my doctor says there is nothing to do about it. If any of you can give me answer I would appreciate it. This is not the hair loss that you get with a flareup. With Lichen Planus follicules are gone and therefore there is no way to grow hair back. I am really worried about it.

September 7, 2015
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A MyLupusTeam Member

Hi MEMartin, Thanks for all the info. I used to loose hair on and off with flares, but now it is a completely different story. Years ago I was taking Biotim and using Minoxidil topically, but that does not work with Lichen Planus. Follicules are gone so Minoxidil has no effect at all. I do hope someone has a solution for this problem. Good luck!

September 8, 2015
A MyLupusTeam Member

What type of DR did you go to to diagnose your hair loss issues? Hair loss was my 1st & only symptom for a year. My GP dismissed it saying our bodies go thru change every 7 yrs. I had 3month of normal hair shedding after the birth of all 3 of my kids. But otherwise normal thick long hair all my life. About 5 yrs ago the shedding started & I started getting concerned after 3 straight months. I started biotene & iron as I was anemic. I noticed maybe 20% improvement. After a full yr of hairloss I cut off 20" & donated it. It was sooo thinned out. Then at the start of the 2nd yr all of my other symptoms started up one by one. At the beginning of the 3rd yr of symptoms I was dual diag with lupus & shogruns. Im in my 5th yr & no change with my hair, still on biotene & iron & plaquinel. Prednisone when I flare. But my hairloss is never noticeably better or worse at any time. Its steady always shedding. I sleep in a silk hair cap/wrap which helps a bit. I now sport a pixie cut & I don't use heat/iron/blowdryer. I also dont towel dry as I read that can increase hairloss. So I use a tshirt & press it against my hair to absorb the water then let it air dry. With all my rituals I notice no big difference but I follow them religiously just cause it might be helpful. I look for any advise or any regimens/products/herbs/vitamins that has helped any of you.

September 7, 2015

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